My son loves when it snows, but he’s sensitive to cold weather

Living in Pennsylvania means having to deal with some pretty brutal winters. We do get to experience all four seasons, which is beautiful, but when the cold weather comes, it can be a bit tricky for some folks to handle. My 6-year-old son, Cayden, has always had a hard time handling the cold weather.

Cayden has infantile-onset Pompe disease, and he can’t walk or stand; he relies on a wheelchair to get around. I’m thankful that it doesn’t affect him emotionally and that he’s usually pretty eager to show off his wheels to new people. Not being able to move his legs, however, makes for poor circulation of his blood.

As soon as the temperature starts to drop even slightly, Cayden’s lower legs and feet get cold. You may have heard people complain about the cold weather, but his issue is different. Touching his skin feels like touching ice! It takes forever to warm up.

To help with this problem, we always make sure he wears a thick pair of socks and shoes in the winter whenever we go somewhere. He likes to wear snow boots or fur-lined Crocs, and when he can, he chooses his fluffy Spider-Man slippers. We also dress him in layers, such as a tank top, long-sleeve shirt, a lightweight jacket, and a heavy winter coat.

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Once we get where we’re going, Cayden likes me to lift up the bottom of his pants and rub his lower legs to warm them. I enjoy doing that because it reminds me of when I was a kid, when my parents would rub their hands together to heat them up and then press them against my freezing cold cheeks. It makes me happy that something I learned from them I can now do with my own children.

It’s not just the winter that causes problems for Cayden. He gets brutally hot in the summer, and we have to dress him in lightweight clothing and shorts or he’ll overheat. When days get too hot, we let him go outside without socks or shoes because his feet get so sweaty.

We also work to keep him hydrated. Cayden doesn’t eat or drink orally, so we have to give him water through his gastrostomy tube (G-Tube). In the summer, I increase his water intake to respond to his increased need for hydration.

There have been summer days when we’ve had to end an outing at the park because Cayden became overheated. On two occasions he’s gotten lethargic, so we had to get him into cool air quickly. Those are scary moments, but once he has cool air and lots of water, he’s back to his normal self in no time.

I monitor changes in the weather closely. I even check a weather app on my phone before bed so I can plan an outfit for Cayden, depending on the weather the next day.

Right now, our entryway is stocked with coats, hats, gloves, scarves, boots, and whatever else we need to keep the children warm. Blankets have also become permanent fixtures in our cars. I’m not too eager to see how much snow we get this year, but if you ask Cayden, he’ll tell you to bring it on!

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